Monday, September 30, 2013

Dippy perceptions of special needs: Get with 2013, people


Two headlines about young people with cerebral palsy caught my eye last week:



The first, from Today.com, is about Courtney Tharp, a pretty 17-year-old in Waverly, Iowa named Homecoming Queen. "She's here every day, she's excited, she's energetic," the Associate Principal of Waverly-Shell Rock High School gushed. Homecoming King and friend Kaleb Staack said, "She comes to school every day with a big smile on her face. She is happy 110 percent of the time. She loves life, and she makes the best out of everything...."


The second headline, from BuzzFeed, is about hottie RJ Mitte, who plays the son of a meth dealer on Breaking Bad. There's not a single mention of his CP until the comments section. One woman wrote, "I've got mild cerebral palsy myself (spastic ataxia hemiplegia, left side) and I am very, very happy that he is so well received—people with disabilities tend to have a hard enough time being accepted and understood. I love you, RJ Mitte and the people who cast you."

It's awesome that Courtney got to be Homecoming Queen, something that likely wouldn't have happened decades ago. It's become somewhat of a trend for teens with disabilities to be named homecoming queen and king (and prom queen and king); the headlines crop up on my Google feed. As Courtney's mom noted, "Kids with special needs are not segregated like they used to be." But with descriptions of her daughter as always happy and a headline proclaiming "She loves life" this might as well be the 1950s, when the best thing most people could say about a person with special needs was how pleasant and happy they were.

Back when I had Max, an elderly relative told me that Max smiled a lot because he was "simple-minded." Not meaning to be insulting, this person was articulating an old-fashioned perception. The comment hurt. But more hurtful is the impact on Max and kids like him, who have to contend with marginalizing stereotypes—yet one more challenge for them to overcome. I still get a lot of "Awww, he's so happy!" comments about Max.

I'm not trying to be a killjoy here. People obviously mean well. I just think it's important for us to be aware of how society talks about those with special needs, and the stereotypes that are perpetuated in the process. Think about it: When so-called typical teens win the title of homecoming queen, do newspapers usually describe them as "happy"? No. There is an inherent prejudice in using this as the defining trait of someone with disabilities, as if it is amazing that teens with special needs are happy to be alive despite their (tragic) special needs.

I don't doubt that Courtney Tharp is a cheerful young woman. Max is the same, and I'm grateful for it. But I wouldn't want people to solely define him by his happiness, because that's just one aspect of who he is. As parents of kids with CP, Down syndrome and other special needs, we know full well that our kids have talents, interests, strengths, weaknesses, many moods and multidimensional personalities, like any kids. Our kids are not happy 110 percent of the time because that would mean they aren't actually human. And if you do not believe me I will gladly send Max your way upon his next screechfest.

It takes more of an effort to get to know kids with special needs. Yet if their peers did, they'd find kids who are so much more than happy. It would help, too, if the media quit playing into the stereotypes. Buzzfeed described RJ Mitte as a "young George Clooney." It gushed over his smile, how he looks in glasses, the guy's chest hair. It treated RJ Mitte like any other hot celeb—exactly what he deserves.

Image of RJ Mitte: Flickr/Gage Skidmore; Image of Courtney Tharp, NBC News video screen-grab

Friday, September 27, 2013

Special Needs Blogger Weekend Link-up: Ready, set, share!


How is it possible another Special Needs Blogger Weekend Link-Up is here already? Why are the weeks flying by so fast? What is the meaning of life? Hmm.

The idea

Link to a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I've Got Me A Theme Song

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, September 26, 2013

10 things everyone should know about hidden disabilities (and what best helps kids)


This guest post is from filmmaker Dan Habib, creator of the acclaimed film Including Samuel (if you haven't seen it yet, you should). His latest work: Who Cares About Kelsey? The film follows Kelsey Carroll through her senior year of high school in New Hampshire as she tries to succeed in her goal of graduating while managing emotional and behavioral challenges, among them ADHD and the emotional scars of a traumatic childhood. It's airing on public TV stations beginning September 28, 2013 (for a list of times, check here). 



My son Samuel is a Red Sox and NASCAR fan, an avid bird watcher, an honor roll student and a gregarious 13-year-old who also has cerebral palsy. I began making my first film, Including Samuel, for selfish reasons. I wanted to try and make the world a more welcoming place for kids with disabilities like Samuel.

As I took the Including Samuel documentary nationwide I noticed a trend. At almost every screening, someone would pose this question in some form: “What about kids with ‘hidden’ disabilities? Can they be fully included like Samuel?”

Hidden disabilities can include depression, anxiety, ADHD, bipolar disorder, eating disorders and a host of other mental health diagnoses. These disabilities are often lumped under the label of Emotional and Behavioral Disorders (although I’m not a fan of acronyms, I’m going to use EBD here for the sake of brevity). The term “EBD” covers a range of behaviors from depression and anxiety to aggression and impulsivity. There are about two million kids in the U.S. with these emotional and behavioral disabilities.

An Including Samuel event in Buffalo, New York, particularly hit home with me, and led me to take on this new film project. I sat next to a mom on a panel who described her precarious morning routine.  Her son had an EBD, and he needed to have just the right food, wear just the right pants and follow the same precise routine or he would have a complete meltdown. When out in public with her son, she would be quickly judged as a "bad mom" because of his challenging behavior. 

“They have no idea what it takes just to get my son out the door every day,” she said through tears.

As I learned more about EBDs, I was inspired to make a documentary about this little-known and often misunderstood group of behaviors. The subject of my documentary, Kelsey Carroll, agreed to take center stage so that people could better understand the challenges faced by students like her.

Through the process of making Who Cares About Kelsey? and speaking with students, families, educators and experts around the country, I picked up some critical facts about this topic. Here, ten things everyone should know about hidden disabilities.
  
1.  Hidden disabilities are more common than you think. 


Over two million young people in the United States have a diagnosed Emotional or Behavioral Disability (EBD). Basically, one in every 10 youths in the United States experiences a mental health disorder severe enough to limit daily functioning in their families, schools and communities.


2.  Behavior is a form of communication. 


When a child is "acting out" it is generally NOT because they just want to be "bad" but because they are trying to say something and don’t have the language or communication skills to express themselves in a more effective way. Some students may need a patient, caring adult mentor at school that they can check in with each day. For students with communication disorders, however, access to Augmentative and Alternative Communication tools will be extremely helpful. 


3.  Punitive approaches are disastrous. 


Many schools are still focused primarily on punitive discipline policies, like “zero-tolerance,” which rely on suspending and expelling students for disruptive behavior. These punitive approaches don’t get at the root causes of the students’ behavior and actually reinforce the characteristics of EBD (anxiety, depression, low self-worth, aggression), which leads to cycles of discipline referrals. Studies also show that these policies do little to improve school safety and disproportionately impact students with EBD (as well as students of color). 


4.  About half of the students with hidden disabilities are slipping through the cracks.

Students diagnosed with an EBD have extremely low graduation rates. Nationally, fewer than 50 percent of students with an EBD graduate from high school, compared to the national average of 76 percent. 


5.  Students with hidden disabilities are among the most segregated of all students. 
An estimated 

65% of students with EBD are not included in general education. The federal definition of inclusion means that a student spends at least 80% of their day in regular general education classes. 


6. Post-school outcomes for students with EBD are dismal. 


National studies show that students who are suspended or expelled often drop out of school, which frequently leads to juvenile delinquency, arrests, and prison. Students with EBD are twice as likely as other students with disabilities to live in a correctional facility, halfway house, drug treatment center or on the street after leaving school.

7. Something good: 15% of schools have undergone an education revolution. 


The Kelseys of the world can’t thrive in a toxic school culture. That’s just one reason that a systemic approach to creating a positive school-wide culture and climate is critical to the success of all students. All parents and educators should be aware of Positive Behavioral Interventions Supports (PBIS), a federally developed approach to improving school culture, supporting students with the most intensive needs and reducing the dropout rate. PBIS is a decision-making framework that guides selection and implementation of the best evidence-based academic and behavioral practices. PBIS has been implemented in 15% of schools nationwide (about 16,000 schools and counting). Watch Education Revolution at Somersworth High School and visit the National Technical Assistance Center on PBIS to learn more. 


8. A 504 is not a tax form, and it may help a child. 


Many parents are familiar with the term IEP (Individualized Education Plan). But not every student with a disability qualifies for—or needs—an IEP. For parents of a student with an EBD, a 504 Plan may be more appropriate. These plans are developed by school teams and parents to support the educational needs of a K–12 student with a disability that “substantially limits one or more major life activity” such as learning, speaking, listening, reading, writing, concentrating, caring for oneself, etc. A 504 plan spells out the modifications and accommodations that will be needed for a student to have equal access to all academic and nonacademic activities and programs, including afterschool programs. 


9. There’s no need to reinvent the wheel. 


There are many longstanding, evidence-based educational approaches that a school can implement to dramatically improve the outcomes for students with EBD. Parents should ask their schools about approaches like differentiated instruction, universal design for learning and transition planning. As with most successful educational practices, these approaches were incubated in the field of special education, but can be crucial for the success of every child—with or without an EBD.


10. Sometimes simpler is better. 


Parents and educators can take relatively simple actions to provide crucial help children with EBD. Inclusion guru Paula Kluth and PBIS expert George Sugai, two of my film project advisors, had concrete suggestions for how parents and educators can help a struggling child.

A word to parents who have kids with EBD:
• Spend 15 minute a day listening unconditionally to your child
.
• Do person-centered planning with your child
.
• Have a discussion with your child about their strengths and accomplishments
.
• Each week, tell your child’s teacher something that s/he did to help your child be successful.

A word to educators who teach kids with EBD:
• Each day, acknowledge a student with EBD for something specific s/he accomplished
.
• Meet one-on-one with students to brainstorm positive solutions to behavior challenges
.
• Call a family member at home to tell them when things are going well
.
• Share one new resource related to mental health each month with colleagues to promote a culture of constant growth and improvement


To apply for a free Who Cares About Kelsey? Education DVD Kit to host a screening and discussion in your community, click here.

For more information about these issues, go here; to watch any of 10 mini-films on the topic, go here.  Habib has partnered with a long list of national organizations that provide free, online information and resources on this topic.

Follow on Twitter @WCAKelsey and on Facebook Who Cares About Kesley?

Dan Habib, Samuel Habib and Samuel's skilled companion dog Mr. P on accessible hiking trails in Greenfield, New Hampshire, 9/14/13

Photo © Dan Habib/Including Samuel

Wednesday, September 25, 2013

Let's talk about kids with special needs and special Disney treatment


When word got out last week that Disney is changing its program for people with disabity at Disney World and Disneyland, many parents of kids with special needs wondered what it would mean for their families' experiences. What's left me even more concerned: The rude, ignorant and insensitive comments people have made. Ones like nobody should get "special treatment" at Disney and that parents of kids with special needs are "over-entitled." Some people have questioned why parents would even bother to take their children with special needs to Disney, given the noise and crowds. Others noted that we should teach our children to wait. Meanwhile, the media's run headlines such as "Disneyland: Disabled Will No Longer Skip Lines," as if our kids are outright cutting lines.

So, OK, let's talk about kids with special needs and special treatment.

Why do kids with disabilities have issues at Disney? 

It depends on the child. Max has both cerebral palsy and sensory issues, because of his neurological condition. Like children with autism, he is startled by loud noises or din. Crowds freak him out, even the mere sight of them. He starts to cry and screech, unnerved, upset and scared. This is the way it often goes at restaurants, museums, events and until recently, our place of worship. Noise-blocking headphones help, though not always.

Max's CP means that his muscle have to work harder than other children's do. He walks well but it takes a lot out of him; when Max falls asleep at night, he is usually exhausted from all the energy he's expended even if he's done nothing but go to school and come home. If he's standing around for long periods of time, his muscles can tighten up and it's uncomfortable, another reason why a long wait on a line could pose problems. We use strollers on trips, but at Disney it hasn't mattered because Max still freaks about the throngs of people on lines.

That's my kid. Other children with disabilities and medical needs can have problems with body-temperature control, epilepsy and extreme anxiety, to name a few issues that make waiting on a line unsafe or impossible.

Can't you control your child?

This isn't about bad parenting; this is about how a child's brain is wired. If I could coax or teach my son to be less scared of crowds or noise, or there was some therapy that did the trick, trust me: I would have done it. Why wouldn't I? It would better his life, our family life, my life.

Then why would a parent bring a child who has endurance or sensory issues to Disneyland or Disney World, two super-crowded, noisy places?

Even though kids with disabilities may seem seem unlike other kids because they speak, walk, behave and think differently, at heart they are still kids. They like to go on rides, just maybe not the dark or loud ones. Plenty love Mickey, Minnie, Goofy, Donald Duck, Daisy D., Tinkerbell, Cinderella, [insert favorite Disney character here]. Some, like my son, can be obsessed with them; Max thinks he and Lightning McQueen were separated at birth. Our kids may genuinely want to meet up with these characters, although they can get overwhelmed when it actually happens.

Parents of kids with special needs are like other parents, too. We want to make our kids happy, along with their siblings. So we're game to try Disney even though it's one expensive crapshoot. There is no trip-cancellation insurance you can buy in case your child with special needs refuses to enter a theme park, as happened to us once (at a local place, thankfully) or vastly prefers the hotel room to the resort (our first experience at Disney World). But off to Disney we go with noise-blocking headphones, hopes for the best and reassurance that there are accommodations for our children's needs.

How exactly is a special pass supposed to help with a child's special needs? 

We've gotten a General Assistance Card (GAC) each of the two times we've taken our kids to Disney World. They enabled us to go through an attraction entrance other than the main one, where possible, and to use Max's stroller as a wheelchair so we could get closer to the start of rides.


Disney staffers typically let us in through an alternate entrance or an exit door, where we'd wait for a bit to get on a ride or meet characters. Sometimes, we ended up on the Fastpass line. We skipped shows entirely because Max was terrified. Was I gleeful that we avoided major lines at the attractions? No, I was relieved, because there was no way Max would have endured them. A quieter, low-key, quick entry is what it takes for my child and many others to experience attractions at Disney. As writer Shannon Des Roches Rosa, mom to a son with autism, said in a post, "Our love of the GAC is not because we get to skip lines and blow raspberries at all the chumps who don't. Skipping lines is not a convenience but a necessary accommodation for our boy."

Isn't the new Disney system of giving people with disabilities a designated return time more "fair" than allowing them to go directly to a ride? 

Disney has stated it's changing its program for people with disabilities because of the widely-reported abuse of it—not because they considered it "unfair." For people who think, We both paid Disney the same amount for a visit and those people get to go in quicker—not fair!, here's another thought: Being part of a civilized society (and being a decent human being) means accommodating people of all abilities. We have accessible ramps to buildings, elevator buttons with braille, closed captions on TV; allowing kids who have issues waiting on line speedy access to rides is another kind of accessibility. Just how the new Disney system for visitors with disabilities will provide the accommodations certain kids need remains to be seen.

If parents of kids with special needs expect accommodations for them, how can they also wish that people would treat their kids like other kids? Isn't that hypocritical?

Actually, they go hand in hand. I ache for people to see the ability in my son's disability and treat him like other kids, rather than staring, pitying him or both. Yet in order for him to be more like other kids—and enjoy the same pleasures in life—he may need extra help at times. Accommodations do not make him separate; they make him more equal. They enable him to have the fun other kids do. And at Disney, they make his dreams come true.

Tuesday, September 24, 2013

The Voice (special needs edition)


This weekend, Max's school had a little festival. Max had a great time playing games and winning (purple) prizes, making sand art (purple, purple and more purple) and saying hi to his friends (not purple). 

There was a barbershop quartet strolling around and serenading kids. Max watched them sing, fascinated. Then he said, "Cars 2 Talking Lightning McQueen" and gestured to them, and I knew he was hoping they could sing a song about it. 

Max didn't have his iPad and speech app handy. Still, I wanted him to tell the guys what was on his mind. I'm really pushing him to be more independent, and also trying to boost his confidence about how he communicates with people. While I am fine with serving as his trusty translator, I'd like Max to use his words. This can be a challenge, given that even I don't always understand what he's articulating, but I think it's important that he keep trying. His speech therapists agree. Ideally, his speech app is around so he can use it if his message isn't coming across.

We went over to the men and introduced ourselves. 

"I'm ax!" Max said. 

"Hi, Max," one of the guys said.

"Arrs ooh aw-eeen ihning eh-eeen!" Max said, and I mentioned that Max has a thing for a toy he called Cars 2 Talking Lightning McQueen, and that the character was from the Cars movies. 

"Ing!" Max said, hopefully. 

"He wants us to sing something from the movie?" one of the men asked. I answered, "Well, really, he wants a song about..."

"...arrs ooh aw-eeen ihning eh-eeen!" Max said.

Meanwhile, a volunteer standing nearby pulled up a video of You Might Think I'm Crazy on her iPhone, Weezer's song from Cars 2. Oddly enough, the barbershop quartet had never attempted to sing You Might Think I'm Crazy in their history of barbershop quartet-ness. Didn't matter, because that wasn't what Max was gunning for.

"Arrs ooh aw-eeen ihning eh-eeen!" said Max.

The quartet started improvising a song that had the words "fast car." Max shook his head and corrected them: "Arrs ooh aw-eeen ihning eh-eeen!" Because, well, an obsession is an obsession. I explained to Max that they were being nice by coming up with a song at all. That's when they said they'd think on a song involving Lightning McQueen. 

A bit later, I saw the guys on the side, practicing. And then, they sang to him; the look on Max's face pretty much says it all.


After, I clapped hard and thanked them profusely.

"Ain ooh!" Max said.

Later, one of the men emailed an MP3 of the group singing the full song:

I want a car just like the car that's driven by Lightning McQueen
It is a car, and the fastest car, that we have ever seen
A big, red, fast car that's built for speed
One that keeps Lightning in the lead
Oh, I want a car just like the car that's driven by Lightning McQueen

It is now Max's favorite song; he seems proud that he made it happen. He also seems to get that having a barbershop quartet sing a song about Lightning McQueen is a very special thing. So far, he hasn't asked me if they will make an appearance at his Cars 2 bowling party, but that can't be far off.

Monday, September 23, 2013

Disney's new program for people with disabilities: the scoop from Disney


With the reveal last week of Disney's new program for people with disabilities, Disney life as special needs parents know it seemed like it was coming to an end. Tweets and comments were flying in response to a MiceAge post that Disneyland and Disney World were discontinuing the Guest Assistance Card (GAC) program and replacing it with a new system similar to the FastPass one.

I have a vested interest: We're headed to Disneyland for the first time in December. To Max, Cars Land is the Holy Land. Disney's always been wonderfully accommodating to our family, and others that have kids with special needs. The GAC has been a lifesaver. Disneyland put out a brief Q&A on the new program (my friend/ Disneyphile Ellen G. shared it). For more info I reached out to Suzi Brown, Director of Media Relations and External Communications at Disneyland.

Brown confirmed that the new system is being rolled out at Disneyland and Disney World, starting Wednesday, October 9. A Disability Access Service Card will be available to eligible guests, defined as those unable to wait in a conventional queue due to a disability (including non-visible disabilities). These guests will be assigned a specific return time for a particular attraction, and can leave the line until then.

The word on MiceAge is that guests with a disability would first obtain a pass with their photo on it. They can use it to reserve a ride time at kiosks set up around the park—one ride at a time, reportedly. If the person with the card doesn't ride, no one in the party can. Brown could not confirm details of how the program will work; Disney hasn't yet communicated it to cast members yet, she pointed out. "We've been working with Autism Speaks for quite some time now, and they have been a great partner in giving us feedback on the new system," she said, noting that it's similar to ones already in place at Universal Studios and Knott's Berry Farm.

Change is always unnerving, but especially so when it involves kids who need accommodating, a place that makes them ecstatic and a system that's worked so well for them until now. Disney is incredible for both kids and parents because it makes family trips that could otherwise be a nightmare possible. That's magic.

Like other kids with sensory issues, Max has a difficult time with waiting on lines and transitions. While the new system means we could wait elsewhere, there's a meltdown factor involved with leaving a ride, waiting around and returning to it, repeatedly throughout a day. What also remains to be seen: Whether there will be significant waits at kiosks, and whether families will have to wait on line at a ride once they return at the designated time. Kids and adults in wheelchairs who are not eligible for the Disability Access Card will be treated the same as other guests (for non-wheelchair accessible rides, they can go through the exit or Fastpass lane).

When I noted some potential challenges to Brown, including the difficulty some kids have with getting on and off lines, she had this to say: "We get that needs of individuals vary dramatically, and that one size doesn't fit all. Like we've always done, guests who have particular concerns can speak with Guest Relations about their particular needs."

I felt relieved to hear that. While the parks can't create a custom program for every child with special needs, perhaps they will come up with solutions for those kids who lose it when there's too much hustle and bustle. "We can't ask what a disability is, because of confidentiality laws, so we rely on guests to share what their needs are, and will continue to listen to those," Brown said. "We pride ourselves on listening to guests." The new program won't be set in stone: "There will be a test-and-adjust period, as we call it," Brown said.

Disney Disability Access 2.0 is in response to abuse of the current system, which made news this year. In May, the Today show did a segment on tour guides with disabilities hiring themselves out at Disneyland so visitors could bypass lines. Just last week, Inside Edition exposed a scam artist selling Guest Assistance Cards to a family at the park, along with another creep who guided a family onto rides using his GAC. (Perhaps there's a Haunted Mansion in hell for these people?)

Originally, the GAC was supposed to help stop abuse. As Robert Niles of Theme Park Insider writes, "When I worked at Walt Disney World's Big Thunder Mountain Railroad, I soon lost count of the number of groups of able-bodied teenagers who rented a wheelchair and took turns riding in it in an attempt to skip as many lines as possible." With the advent of sites like craigslist, a new generation of scams became possible. The Disability Access Service Card should help stop people from making financial gains off the system, along with garden-variety jerks who abuse it—although, sadly, jerks will always find a way to do their jerk thing.

One thing's for sure: Disney has an admirable history of accommodating guests with special needs. There are wheelchairs and Electric Convenience Vehicles available for rent, special dietary offerings at most restaurants, designated relief areas for service animals, plus options for guests with hearing and visual impairment. I can't imagine that Disney would ever leave kids with special needs in the (pixie) dust.

So before we get too riled up, let's see how the system plays out. Parents of kids with special needs sure aren't shy about speaking up when something isn't working. If the realities of the new program prove too hard to handle, the parks will hear about it—and hopefully make adjustments accordingly. Disney may be a magic place but it's a business, too, and executives won't want to lose hordes of customers or get continuous bad press. Or incur the wrath of Max.

Suzi Brown couldn't confirm whether details about the new system will be posted online when it starts. Parents planning a visit can call Guest Information: (714) 781-4636 for Disneyland and (407) 824-4321 for Disney World.

It's sad to see the Guest Assistance Card go. Still, I'm taking a wait-and-see approach. As my friend Laura said, "I'm wishing for the best—upon a star, of course."

Image: Flickr/BoogaFrito

Friday, September 20, 2013

Special Needs Blogger Weekend Link-up: Oh, happy day


It's another Special Needs Blogger Weekend Link-Up, a place to share deep thoughts and totally shallow laughs, because you can never get enough of those.

The idea

Link to a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Max is My Name And Chocolate Milk Is My Game

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, September 19, 2013

Disaster preparation for special needs families: 8 simple things to do


It's that time of year when I worry about hurricanes. It's impossible not to, given that Sandy temporarily displaced us, Irene destroyed our basement and we're smack in the middle of Atlantic hurricane season.

September is National Preparedness Month, sponsored by the Federal Emergency Management Agency (FEMA). As much as the mere basics of day-to-day living consume me, I know we need to  prepare for the worst, especially as a family that has a kid with special needs. I had few clues about exactly what to do until I spoke with Marcie Roth, director of the Office of Disability Integration and Coordination for the Department of Homeland Security/FEMA. Marcie, in fact, has insider scoop: She is is mom to two children with disabilities, "and proud of it," she says.

We talked about simple things parents could do to make sure their families are ready for disasters, whether a hurricane, tornado, flood or man-made one. As she said, "Parents think that they can leave emergency preparation to the experts, or that it's too hard to adequately prepare. But it is entirely possible to take steps to be well-prepared." Check out her tips, and download the government's Family Emergency Plan PDF, a simple form for recording critical info with wallet-size cards to fill out.

1. Have an emergency stash at home.
Besides the basics—water (assume one gallon per person per day, with a three-day supply), a flashlight and a battery-powered radio—you want to have extras of hygienic products (like wipes, diapers and feminine hygiene stuff), foods (nursing supplies, formula, pre-packaged baby food and canned food, dried nuts and other non-perishables), medical needs (fever reducer, rash ointment), comfort items (like stuffed animals) and activities for kids (books, puzzles games). If you're like me, you might also require an emergency stash of chocolate. I keep all this stuff in a gigantic plastic bag in our basement.

2. Prepare a go kit.
Consider keeping it in your car. The best way to put one together: "Take inventory of what you use on a daily basis, from the minute you get out of bed in the morning till you go to bed at night," says Roth. Make a list on your smartphone or a notepad. "Depending on your family's and children's needs, there may be stuff a lot of other people wouldn't need in an evacuation situation to take to a shelter—and for your family, that could make all the difference between being able to maintain health, safety and independence and needing to be in a much more medical setting." Some families, she notes, "might need a whole lot of Velcro! It could make dining utensils work for a child if adaptive ones aren't around. Or if a child has autism and that child spends a lot of time with electronic equipment or toys, you'd want to make sure you have lots of batteries, and crank charger if that's an option—things that will make it possible for kids to soothe themselves. Or a child with sensory issues might need seamless socks and noise-blocking headphones or rope and sheets to create a private area in a shelter."

3. Let your child help plan
"It's really critical to engage your child to plan with you, so it's not just for him," says Roth. "Putting stuff into a kit can help give a feeling of safety and security. And it helps kids begin to share responsibility for family safety."

4. Make plans for meds 
"This is true for both kids and adults, something I personally spend a lot of time focusing on," says Roth. "I take thirty meds a day, some of them life-sustaining, and one needs to be refrigerated." In case there's no power, you want to have a printout with lists of medications and prescriptions and a flash drive with the info (keep them in your go-bag). "I email updates to my gmail account, so I can access them from there," says Roth. "Given that insurance companies typically won't allow you to have an 'extra' amount of meds, you could build up a buffer! Say every couple of years you or your child have a procedure and don't need to take meds that day, or you otherwise skip a day or you have extra left over from a leap month. Start to build up meds! But you don't want to just collect them in a container, or they'll expire. I regularly add a new day of meds and use up one dose. Replenish it as best you can."

5. Make plans for medical equipment, supplies and assistive devices, too
"If your child uses any or all of these," says Roth, "you'll need a plan for bringing what is absolutely needed, and making do with what isn't critical. For instance, what is your plan for evacuating with your child's power wheelchair, augmentative communication device, bath chair or nebulizer? Don't forget chargers! And if you absolutely can't bring the 250-pound power chair, do you have a folding or lightweight manual chair?" Even if you have to leave everything behind, she continues, "if your child has a cushion or molded seat that helps them maintain sitting or prevents pressure sores, bring it. And if pressure sores are a concern, get a piece of egg-crate cushioning for your go-kit to use over a cot, on the floor of a shelter or even a hotel room or relative's home. If your child uses a feeding tube or catheter, bring a supply as you may not have access at all, or access to the type or size that works best."

6. Identify emergency shelters in your area 
Every town has some kind of Office of Emergency Management, so contact yours for information and check out the emergency shelter info at DisasterAssistance.gov. Consider dropping by your local shelter with your child, so he won't be as scared if and when your family needs to go there. It's also good to inform experts about your child's special needs. For example, if you have a child with sensory issues, "while you won't be able to reduce the din of the crowd at the shelter, having a quiet zone cordoned off by a sheet could help reduce visual stimulation," notes Roth. Consider getting involved in planning, too, she urges: "As parents of kids with disabilities, we are absolute experts in problem-solving, thinking on our feet and making significant changes unexpectedly. They need us at their planning tables!" Note: While there's no harm in identifying yourself to the local electric company if you have a child with medical equipment that requires power, "you need to be well aware that is not a reliable solution," says Roth. "You might think you're on the list for priority restoration, but what if that priority is every neighborhood?"

7. Ask how your child's school or childcare are prepared
Inquire whether they have a written plan for evacuating kids and moving them to safe locations in event of disasters and a written plan for notifying parents in case of emergency and reuniting parents of children. If your child is an inclusionary program, ask about a written plan for children with special needs. Then make sure they have the materials needed. "Our school tells us to send in a day's worth of stuff," says Roth. "That's great for bad weather and one potential overnight, but we need to be thinking far longer. I personally prepare for two weeks! If your child needs life-sustaining things, you want to make sure all the environments your child is in are also adequately prepared."

8. Consider volunteering a young adult
Feeling Safe, Being Safe (FSBS) provides tools and resources for young men and women with intellectual and developmental disabilities to participate in personal, family and neighborhood emergency preparedness, and also trains leaders as certified preparedness trainers. "When youth get involved, they get their parents to be more prepared, too," says Roth. "A young person with autism might have a particular job—say, going to the community center to do a task. And then, if there's ever a need to evacuate, he will be in a familiar setting."

One last FYI: A free app called Group Me lets you instantly conference or text a pre-selected group of family and friends, to make sure everyone's safe.

For more information, visit FEMA's Ready site and the Emergency Preparedness section on disability.gov. The Disaster Resistant Communities Group has an excellent video on preparedness for families of kids with special needs.

UPDATE: Save the Children has free printable Contact Cards you can fill out with information about your child (including allergens) and key contact info, should you ever become separated during an emergency.

This is the second post of a series on disaster planning for special needs family that I'm running this fall. See the previous post to find out how your state's schools and daycare centers rate for disaster planning. 

Wednesday, September 18, 2013

I'm not a great parent just because I have a kid with special needs


The woman smiled at me as I walked by. "I just wanted to say that you two are excellent parents," she said.

We were hanging at a "leapfrog" pool where kids could jump onto giant green pads, swinging themselves from an overhead rope. Max can't reach his arms up that way so Dave was carrying him from pad to pad, Max was loving it and I was standing on the sidelines cheering them on.

We hear it on occasion from strangers, kudos for parenting Max. Chances are if you're the parent of a child with special needs you've heard it, too, especially that well-worn phrase "God only gives special children to special people." Perhaps you caught that story the other week about a diner who paid for the meal of a North Carolina family that had a child with special needs, then left that message on their bill.


I know people mean well, and it sure beats pityspeak and pity stares, but this thinking always takes me aback. The help we give Max is part of parenthood; we just happened to get a kid who needs extra assistance. When people admire me or Dave for the simple act of parenting Max, it makes me hyper-aware that they think it must be so tough—a burden, even—to parent a child with special needs.

Considering parents of kids with special needs to be saints overestimates us, and underestimates our children.

Look at it this way: If Max were your average toddler and Dave was in the pool helping him move around, would the woman have said a word about what amazing parents we are? No, I'd venture, she wouldn't have. That's what parents of toddlers do, right? She deemed us "excellent" parents because Dave was moving around a child who was physically unable to do it himself and I was happy to see him happy. That doesn't make us excellent—it makes us parents.

Really, Max deserves the kudos. He's a cheerful, loving, quirky, bright kid who's a lot of fun to be around. Parenting him isn't some magnanimous act we do out of the goodness of our hearts; he's our child. We feel the same about Max as we do about Sabrina: We're every bit as lucky to have them as kids as they are to have us as parents.  

I am not saying the gig isn't draining at times; it is. I give Dave and me props for juggling all of Max's doctor and therapy appointments and still managing to keep it together. (Well, most days). I give us props for doing battle with the insurance company to get said therapies paid for. I give us props for the physical labor; Max's cerebral palsy means he still requires a fair amount of lifting. I give us props for building a great team of experts to help Max. Truth is, though, parenting in general takes a lot of work; Sabrina, my so-called typical child, has plenty of special needs, too. What I don't need is acknowledgment from strangers who assume we rock just because we're raising a child with disabilities.

Part of my struggles here come from a desire for our family to fit in. If you meet us at the pool or the park, chat about the weather, how old the kids are, my amazing bikini bod (somehow, that never happens)—you know, like you would with any parent of any child. Exalting us can make us feel even more alienated from other parents than we already do.

Putting a halo over the heads of special needs parents could actually do kids harm. What if I were a bad parent, the kind who abused her kids? Would it go under the radar because people assume I'm good simply because I have a kid with special needs? As Rick Smith of Noah's Dad pointed out in a recent post, "I've talked to more single mothers than I want to count whose husband divorced them after their 'special' child was born. Divorcing your wife or abandoning your family isn't something a 'special' (good) parent does...."

I'm a fine parent, although I have my share of mom fails: I yell when the kids get on my last nerve, sometimes let them watch too much TV, allow them to skip baths when they ask because I need a break. This is called real-life parenting, the only kind I know. I am not supermom, super-human, super-saintly, supercalifragilisticexpialidocious. In many ways, I am a mother like any other mother. In many ways, Max is a child like any other child. I'd so like people to see us both that way.

What I said to the lady at the pool was, "Thanks! We do the best we can, like any parents." And that's exactly the way it is.

Spare me the kudos for being Max's mom. I treat him the way other parents treat their kids, with or without a disability. We enable them, we help them thrive, we make sure they're having a whole lot of fun. It's called: parenting.

Tuesday, September 17, 2013

Parents who run races with their kids with disabilities



This guest post is from reader Barb Williams, mom to Rhys, 10, who has cerebral palsy, global delays and Cortical Vision Impairment. This year, the two of them started running in races (that's them above, second from right). "Cognitively, Rhys is at a level with his peers," says Barb. "He uses a Dynavox Eyemax for school work, and can verbalize a 'yeah' and 'uh-uh.'" The family lives in Oneida, New York; Barb and her husband work for the quality control lab of the local dairy processing plant, each on different shifts. The family has two labs. "The younger one loves to run with us," says Barb. "I am sure we make quite a sight running down the street!" Here's her amazing story that could just inspire you to take up running.


 
The Williams family

Last spring I decided to go to the doctor because I was bone tired exhausted. After running a bunch of blood tests to rule out several things my doctor tells me it is stress. He says, "Hey, you have a special needs child and work full time, your stress level is very high. You need to find an outlet. Maybe you should try walking or working out."

In my mind I hear hysterical laughter because me and working out go together about as well as the North Pole and penguins. But to prove him wrong I start walking around the neighborhood three days a week. And darn it if I don't start feeling a little better. Sometimes I hate when he is right.

So after a month of walking there is a big local race on TV and as I am out walking along I start to wonder if I  could run a block. So I give it a try and hey, what do you know, I made it! And best part, I didn't keel over! Then a friend tells me she ran in the 5K at that big race and I should do a 5K too because you know it's only 3.1 miles. Again, I hear that hysterical laughing in my head, but I decided to try to do that distance in my neighborhood. I wanted to die and kept thinking "Yup this is going to kill me." But then I finished and realizes I did it under 50 minutes first time out. Which admittedly is slow, but hey I did it so yay! So I decided to increase my walks to run/walks and once a week threw in a 5K distance.

After a few months of that, I realized that I was less tired and had more energy to do things with my son. I was happier in general because I felt better. Bonus Some of those pounds that I had been trying to shed forever finally started to come off!

So in a moment of bravery (or maybe insanity) around Christmas I  signed up for a 5K. Then I realized I must be crazy because hey, I am not really a runner. I am more of a plodder around kind of person. But I've committed to it so now I've got to do it. I posted about it on Facebook so that my friends will hold me accountable and make me do it.

Then one special friend from Colorado asks me if I've ever heard of Athletes in Tandem. Nope never, but I look them up and find out that they do some pretty cool things with special needs athletes. They get them out having fun. Give them a chance to compete in road races, dualathlons and triathlons. They give them a chance to focus on something fun and not just medical stuff. But I didn't see where they are doing anything in my area so I emailed the founder, Dennis Vanderheiden.

I ended up hang a very nice conversation with Dennis. He started Athletes in Tandem two years ago, motivated by Dick Hoyt, who pushes his son with CP, Rick, in races. We talked about the possibility of starting a chapter here in central New York. I admitted to him my lack of experience in anything involving athletics. He said we can work around that. Told me where I could find a jogging stroller. So on July 4 of this year I started running with my son. Again I thought that this would be the death of me. What I've discovered is that running with him is so much more than I ever thought it could be.

I hook up my iPhone to the handlebar and we listen to a hodgepodge of music. We get updates from my Map My Run app that tells us how far we have run and how fast (or slow, as the case may be). He laughs when I say how slow we are going. He yells at me when I start walking—then laughs when I tell him to quite complaining I am dying back here!

On Saturday Aug 3 we attempted and finished our first 5k. It was supposed to be a nice small local 5K. It was small and local. It was nice. It was harder than hell! It is called the Grizzly 5K in Manilius, NY, if you want to do a super hard run. I had no idea the hills that were on this course. I would have had a hard time doing this course without Rhys. But I don't think I would have finished without him either. I wanted him to cross that finish line. I loved his smile when the volunteers would cheer us on. So we finished in 46:05. Never been so happy to cross a finish line in my life!!!!

This is us about 2.8 miles in I'm smiling because I can hear the music at the finish, so I know it is almost over at this point.

Then we got permission to run in another local small event that doesn't normally allow jogging strollers, but they made an exception when I wrote to the event organizer and explained that I wanted to push my non-mobile, non-verbal son. This race went better as it was super flat and it was a cool morning. Our stretch goal was to finish in 40 minutes; we killed that at 37:45! Best part was my husband had the day off from work so he was there to cheer us on.


Then on August 24, we raced in the Turning Stone Races. Dennis flew in from Colorado to help us try and kick-off our chapter. We had four teams that ran in the 5K and two teams that would be running the half marathon on the 25th. As we were unloading equipment to get ready for the race a woman comes up to me and introduces herself. She says, "I saw you race the week before." She wants to know if there is a way she can help push in future events so I start to tell her all about Athletes in Tandem. Turns out she is a triathlete and not only wants to push in road races, but wants to help in tris as well. So a great start and we haven't even run yet!

Our four racing teams, pre-race: Dennis pushed 21 year old Becky (she has spina-bifida), Jennifer Cossette pushed Abby (a 6-year-old with cerebral palsy), I pushed Rhys; and Howard Holdridge pushed his 17-year-old stepdaughter Emily, (CP).


Dennis and Becky finished so fast that she won overall female.

The race organizers had us register the kids as individuals, but that back fired when Becky won as some people grumbled that she shouldn't have been awarded a prize as she didn't actually run. So to solve this problem, in the future we are registering just one bib number an driving the kids any swag that comes along with it. Oh well haters are gonna hate right?

Howard and Emily finished in 27:38—a very respectable time! 

Jen/Abby and me/Rhys finished together in 37:07—first time Rhys and I ever finished in less than a 12:00 minute mile so I was excited.

My husband told me that there was a guy who saw us coming around the corner at the finish and yelled out "Here come the wheelchair people…. everybody yell" and I can tell you they did. It was amazing the cheering, and Jen and I both choked up as we crossed the line. It was so emotional to push him across that line because all of our friends and family were there waiting. All of his grandparents were there cheering for him—just priceless.

Here are the photos of Jen I and finishing with our kiddos.



The next morning was the half marathon and Dennis pushed Rhys and Howard again pushed Emily. These guys were amazing! The 5K was at 5 pm on Saturday and the half was the next morning at 8am. I barely can finish a 5k and then to turn around and do a half (13.1 miles!) pushing someone else—just amazing. Even more amazing is the woman who stopped me in the parking garage for the 5k ended up pushing Abby in the 10k on Sunday morning. Again another amazing individual!

Here is Kathy and Abby finishing. Kathy is such a class act that she gave up pushing Abby across the line to let her brother do the final push. Not a dry eye in the crowd, I tell ya!

Rhys and Dennis finishing—check out his insane time!

Howard and Emily finishing the half; her face says it all!

My son's general education teacher came up to us after the half as he had just finished. He said to Rhys, "Well you and I are going to have a lot to tell the class on the first day of school this year! Be sure to bring in your race medals so we can show them off to the other kids!"

So now Rhys has a "typical" thing to share with his classmates this year. We have at least four more races this year as long as he stays healthy. So nice to have things to look forward to that don't involve doctors or therapy appointments. So nice to have my son get so excited about going out.

If you are interested in finding out more information about Athletes in Tandem, look them up on the web or on Facebook, or follow them on Twitter. You can also reach out to Dennis Vanderheiden at info@athletesintandem.org or at (970) 217-6751.

Athletes in Tandem has chapters in Fort Collins, CO and Louisville, KY, and they are trying to start ones in Boise, Idaho and in Syracuse, NY. It is a non-profit organization and donations are always welcome as the jogging strollers alone cost about $900 a piece.

Even if you don't have an organization like this in your area I encourage you to get out there and do some kind of athletic activity with your child—you will both get a lot out of it!

Monday, September 16, 2013

Family time, special needs style


Max and I went out for pasta this weekend while Dave took Sabrina to one of those bounce places full of inflatables. Sabrina went off on a playdate while Dave watched Max biking up and down the street and I ran some errands, then we switched and Dave went to pick up some groceries. When Dave took Max for a speech therapy session, Sabrina and I went to the paint store to pick out a color for her bedroom (Benjamin Moore Spring Violet).

Saturday night, we all went to a party at a friend's house. We got there first, so Max could ease into it, only he wasn't happy and started screeching. So Dave took him for a ride to calm him down, Sabrina played with kids and I chatted with my friend. Later, Max quieted down and I hung with him on the couch watching Disney Jr., Dave out on the deck drinking wine and Sabrina bouncing on a trampoline with the kids. As I sat there, I thought about how our family feels so divided at times, and it got to me. And this is even before Max's Sunday special needs program and Sabrina's dance and gymnastics lessons kick in.

Last night, I asked Dave if he ever wishes we did more stuff together as a family. "Yes, I do," he said. "But it's part of the deal, honey. Try not to let it bother you." That's the way things often go: I overthink and over-feel, and he's the opposite. We balance each other out.

Of course, there's stuff we do as a family: museums, fun parks or regular parks, vacation anywhere (we all love road and plane trips), restaurants Max is used to, just hanging out on our street. We've made major strides from when Max was little, and he barely ever wanted to leave the house. Yet there are still limits to what we can do as a family, typically because Max doesn't feel comfortable going to some places or has no interest, or he's not physically up to it.

One wish I have for the upcoming year is finding more activities to do together—and that Max will mature into it. I want to enjoy both kids with Dave. I'd like to have a whole lot of memories of us doing everyday stuff together, not just trips. At some point, the kids are not even going to want to be with us (at 8, Sabrina already has teen-age girl 'tude), and I want to pack it in while we can.

We've never gone on a family hike, which I'd really like to do. So we're going to try in a couple of weekends, find a short flat trail and bring a collapsible stool for Max so he can rest up. He'll wear his Cars 2 backpack. Sabrina will change her outfit five times and her earrings twice before we leave as I say, "Sabrina, let's gooooooo! NOW!" The kids will squabble in the car ride en route there. As we walk, Max will remind me approximately every five minutes that he wants a talking Lightning McQueen for his birthday. Sabrina will say "I'm tired!" maybe fifteen minutes after we set off. Perhaps we'll tell knock-knock jokes or sing songs, ones Sabrina learned at Girl Scouts or "You Might Think I'm Crazy" from the Cars 2 movie. Dave will ask why I didn't remember to pack his seaweed snack and I'll remind him, "I'm not your maid!" We'll collect fall leaves. I'll take deep breaths of clean, woodsy air and tell everyone to. Someone will trip or fart or burp and we'll all laugh.

You know, just like any family.

Friday, September 13, 2013

Special Needs Blogger Weekend Link-Up: Good stuff!


It's another Special Needs Blogger Weekend Link-Up, your home away from home. Or something like that.

The idea

Link to a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Just Call Me Lightning McQueen

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, September 12, 2013

Special needs wisdom in Chinese fortune cookies


You know that old game of attaching "in bed" to the end of a fortune cookie message, and how it makes for laughably great insights? Well, it turns out you can read special needs wisdom into fortune cookies, too. 

This occurred to me as Sabrina and I cracked open a bunch the other night. All of us love going out for Chinese food, especially at this nice restaurant five minutes away from the house that's tasty and never crowded, which makes it very Max-friendly. His faves: Hot-and-sour soup, fried rice with veggies, slices of avocado.

"A journey of a thousand miles must begin with a single step," said the first fortune we opened. Instantly, I thought of how much I ached for Max to walk when he was a baby. But he needed to commando crawl, pull to stand, be shown by the physical therapist how to crawl on all fours and practice moving in a walker before he took his first independent steps at age 3, right on his birthday and right into my arms. For Max, every aspect of his development has been about baby steps.

After that, I started pretending all of the fortunes related to Max (I didn't tell this to Sabrina):

"Your many talents will become obvious to those around you."

OH YES. It's one of my biggest wishes: That people will look beyond Max's disabilities and discover his many abilities.

"Do not fear what you don't know."

This one's a doozie. I try not to worry about what the future will bring for Max, because I learned long ago that the only thing this accomplishes is distracting me from his wonderful present. Here was yet another reminder to stop freaking about the unknown. And eat more egg roll.

"Many successes will accompany you this year."

Wheeeee! I have a feeling Max's reading and writing are going to take giant leaps forward.

And then, last, what I hope for Max and all our children: 

"You will find yourself in a position of dignity in the end." 

R-E-S-P-E-C-T.  It's what our kids need—and deserve—from the world.  

True, this does not necessarily work with every single fortune ("Smiling can often make you look and feel younger") but it did for most. 

Next time you have Chinese, try this and report back!


Wednesday, September 11, 2013

The friend I never had who died on 9/11, remembered


The other night, I lay in bed and relived September 11 in my mind: The sight of the burning Twin Towers from the ferry deck on my commute from Hoboken, New Jersey to New York. The unspeakable images I saw on TV in the office conference room. The added terror of military planes flying overhead—were we at war? The horror of the unimaginable number of innocent people killed. Hoboken had the largest death toll of any city, 57 people.

I tried to picture the girl. I no longer could. I'd long ago forgotten her name.

This is the girl whose face I'd seen everywhere on "MISSING" flyers around Hoboken after 9/11—on telephone poles, store windows, mailboxes. "Have you seen our daughter?" they read.

There were so many of those "MISSING" posters, each sadder than the next, but the sheer volume of flyers with her face made her stand out. She had such a nice smile. She looked like a girl I would have liked to hang out with. Her face haunted me.

Long after it was clear there were no more survivors from the towers, I kept hoping that somehow, she'd be found.

The flyers of her stayed up until they were in tatters and then, they were gone.  

I was distressed that I could no longer envision that girl. I owed that to her, at the very least.

My morning ritual on 9/11 is to go to a local park at the time the first plane hit, 8:46 a.m., for a private moment of silence. Last year, the kids and I baked cookies and brought them to the neighborhood fire department.

Nothing ever feels like enough.

I got out of bed, logged onto my computer and started scanning a list of New Jersey residents who'd died on 9/11, 674 names in all. I read down and down, my chest tightening. And then, near the bottom: 

Melissa Renee Vincent—28—Hoboken.

I was pretty sure it was her. I Googled. 

Yes. The girl. That face. That smile. 


I searched and found a tribute to Melissa in the series of write-ups by The New York Times. I wondered why it had taken me this long to look her up. The business of work, parenthood, life seemed like a pathetic excuse. I owed it to her. 

Melissa had moved to New York City from a town near Rochester. She worked as a resources manager for Alliance Consulting Group on the 102nd floor of 1 World Trade Center. She loved opera, movies, Broadway shows and Yankees games.

I Googled some more. Her obituary mentioned a brother and a sister. Elsewhere I read that her father, David, had frequently appeared on CNN in the days following 9/11, begging people to help find his daughter. I learned about the memorial stone in front of the building she'd lived in, and that her alma mater, SUNY Oswego, had created a memorial garden to honor her (class of '94) and the 11 other alumni who'd died on 9/11.

I found a Pinterest post for Melissa on a 9/11 In Memorium board. It featured an article that quoted her mom, Lucille. She spoke of her daughter's generosity and kind spirit. "People really gravitated toward her," she said. "People liked to be around her."

I wasn't sure what I could do to honor Melissa's memory. I ended up at DonorsChoose, where teachers post requests that people can help fulfill. I found a project called "I Create with iPads" started by a teacher at the Northwoods Fine Arts Academy in Sand Springs, OK, described as a high-poverty area. "My students come from a small town environment. Many are underprivileged. Our school strives to infuse the arts into their core learning at every level," read the writeup. Students visited art museums, operas and dance performances. The teacher is hoping to get two iPad Minis so the kids could further explore artists and art methods. 

I made a donation in honor of Melissa Renee Vincent. This would have been her 40th year. Perhaps, like me, she would have been married, with kids. Maybe living in New York—an article said she'd wanted to move there—and still loving Broadway shows and the opera.

I fell asleep, picturing her face once again.

RIP, Melissa Renee Vincent. I will not forget.

Tuesday, September 10, 2013

11 things a special needs dad wants you to know


This guest post is from Gary Dietz, dad to 14-year-old Alex who he describes as a "warm, funny and challenging boy who happens to have a rare genetic disorder, a 13q deletion." As a result, Alex has developmental, cognitive, physical and behavioral challenges. An entrepreneur and educational technology marketing professional based in New Hampshire, Gary is working on a book and web project called Dads of Disability: Stories For, By, and About Fathers of Children That Experience Disability (and the Women Who Love Them). He's funding it at Indiegogo through October 5, and has raised $4500 to date; he aims to raise additional funds to find more essayists. Meanwhile, these are the top things Gary really, really wishes more people knew about special needs dads like him:

1. Dads like to be invited, too
On more than one occasion I’ve learned that my child didn’t get invited to a social gathering—not because of his disability, but because a female caregiver wasn’t available to go with him. Yet his Dad was available! Please don’t assume a child can’t attend a birthday party or playground get-together because a woman isn’t available to accompany the child. If the dad is single, invite him even if he is the only dad coming in a group of moms. An involved dad of a child with special needs is used to being one of the few men in attendance. Who knows, he may change a diaper or two for Team Mom at the playdate if you play your cards right!

2. It bugs us when you casually moralize
The assumption that having a child with a severe disability is an acceptable reason to engage in a deeply personal conversation with a stranger completely flummoxes me. I don't mind when people ask about Alex—I am all for growing understanding about his condition and spreading awareness—but do not tell me that a vaccine caused my son’s disability (his genetic condition occurred at conception!) or that God chose me for this challenge or that I am a saint be my son’s father. Especially if I don't know you. If I saw a stranger at a bar having a three-martini lunch is that an invitation for me to talk about alcoholism? Exactly.

3. Sometimes men cry
I may well up once in a while for reasons that may not seem all that clear or reasonable. Yes, I'm macho and manly. But I’m also human. If I take a call at work from my child’s caregiver and she lets me know that my son just got on his therapy horse for the first time after struggling for four months just to make it from the barn door to the horse, the corners of my eyes may glisten. Or if I learn that my son climbed onto the slide at the playground for the first time and I seem in shock and in tears, don’t be surprised. Or if I watch your typically developing child win the spelling bee or hit a home run and I tear up, I may be mourning something for my family. (No worries, I know how to celebrate for you—see #6.) Catharsis is good for the soul. Just because I show emotion doesn’t mean that I shouldn’t be considered for a promotion, that I can’t be a part of boys' night out or that I am somehow a lesser man.

4. Yes, men go to their kids' doctor appointments
If you are a boss, an HR professional or even a coworker, please assume that a child’s doctor and school responsibilities—especially the sometimes more complex ones of children with disabilities—are split between multiple caregivers. That may not be the case, of course, but it's wrong to simply assume the opposite. Be open to the fact that the Dad may even be the one that handles a majority of these appointments. I’ll get my work done, don’t worry. And I know you worry because of the following.

5. Dad's career can be unfairly impacted, just like Mom's
It's so wrong when people assume that the spectacular care and growth of my child was fostered exclusively by his mom while I was off having martinis with Don Draper. Men have to make choices too, and my career has been impacted in many ways—mostly unfair ways—by me prioritizing my son’s needs. At one job, a manager ordered me to let my son’s mom take him to a serious hospital exam. “Only one parent is needed, and the child has a mother” was the boss’s comment. I told him I was going, and if I didn’t have a job when I returned, well, that was his choice. (I kept my job.) Another time, in a job interview with someone I knew from a previous position, the knowledge that my son has special needs came up as a “negative” on my weekly availability—before the interviewer even asked me what hours I was available to work. Please don't assume that I can’t manage work as well as the next person because of my child’s needs. Instead, marvel at the skills a hyper-organized father of a child with special needs has! We can be great managers, having learned the politics and patience of school meetings; we have sharp communication skills (you should hear us talking with the insurance companies); and we are masters of budgets, advocacy and diplomacy.

6. We are interested in your children, too
Don’t assume I don’t want to hear about your child’s achievements because you think you may make me upset or jealous. I’m interested. Just do one thing for me: Show as much authentic excitement about my son’s achievements as I show you about your child’s achievements. We are both equally as proud of our children.

7. Don’t think I'm divorced because of my son’s disability
The statistics establishing causality between having a child with a disability and a higher divorce rate are shaky at best and incorrect at worst. My son’s issues may or may not have exacerbated existing issues between me and my ex. But our divorce has very little direct relationship to my son’s challenges. Besides, would you ask any other family if their child “caused” their divorce?

8. Let's not pretend intense realities are easy on me
My son is in a residential placement that he entered at age 12 a little over a year ago. (He is home on the weekends.) This is a huge change, loss and adjustment for him. But also for me, his father. Well-meaning people make me feel poorly when they suggest I think of it as he went to college "early." Many parents of a tween can’t handle sending their typically developing kids to sleepaway camp for a week without major stress. Why would I then be expected to “pretend” that this long-term residential experience is like college, and feel better? And to top it off, now you have me thinking about the fact that he may not end up having a college experience at all. It’s like you are asking me to pretend his disabilities aren’t real and the impact of my child moving away at age 12 be cared for by strangers is somehow typical. The best support you can offer is empathy—an ear or a hug—and just say you can’t imagine how that must feel. And let me talk (or not) about it as the situation requires.

9. We hate being mistaken for babysitters 
It’s not just the Asian-American mom in a New York City park who gets annoyed at being mistaken for the nanny when she is, in fact, the parent. That insult by assumption is similarly painful if you assume an active and involved man must be a child’s helper, his babysitter or his teacher. More than once, when accompanying my son to a daytime therapy or doctor appointment, someone assumed that because I was helping my son during the day and because I was a male that I must have been a paid helper. “Dad” would have been at work, right? If you are a stranger and you really find yourself with an unmet need to know if I am in fact the dad, just say to me or my son “Sure is a great day to be out with Dad!” or something like that. And if I am not the dad, I’ll be sure to let you know.

10. Don’t assume my son and I are gay, either
If you see an older man holding a teen's hand or a younger man's one, think twice before judging us—not that being gay isn’t a fine thing. Who knows what the relationship is? I've seen the looks my son and I get at times from males, especially teen boys, and I know exactly what they are thinking. (American women are far less judgmental this way than American men are, but it still happens.) I hope those who give negative stares and under-the-breath comments are or were lucky enough to have a father or father figure to hug them and hold their hands in public with as much care and love as I provide my son. So come on, guys, lighten up. 

11. I'm not a "special needs parent" and I don’t have a "special needs son"  
Once, a school principal referred to me as a "special needs parent." I like to think that the depth of my character was formed both before and after I was a parent. And formed by things that have things to do with disability issues—and things that have nothing to do with them. And that I am much more than a parent solely concerned with special-needs issues. Likewise, when you get to know my son—when you really get to know him—his special needs can melt away and he can be funny, happy, sad, angry and all of the other things that children are. My son is my son, not my “special needs son.” And make no mistake, he is amazing. 


To learn more about submitting essays and poems for Dads of Disability, click here; like the Dads of Disability Facebook page here!



Related Posts Plugin for WordPress, Blogger...